Introduction + child's Medical condition

[jojoki]

hi mummy epicurean and angelmum.. hats off to both of u! U both are the epitome of mother's love. I just want you both to know that u two are wonderful mummies and God will surely bless u n ur family. It must be heart-wrenching to see our child in discomfort. just wanna share tis with u:

This is the most touching and inspiring video ever...

One day, a son asks his dad "Daddy, would you like to run a marathon with me?"
The father says "yes". And they run their first marathon together.

有一天，兒子問爸爸：「爸爸你和我ㄧ起去跑馬拉松，好嗎？」
爸爸說好。

Another time, the son asks his dad again "Daddy, would you like to run a marathon with me?
"The father says "yes son".

第二次，兒子又問爸爸：「爸爸你和我ㄧ起去跑馬拉松，好嗎？」
爸爸又說好。

One day, the son asks his father "Daddy, would you run the Ironman with me?"
The Ironman is the most difficult triathlon ever (4 kms swimming, 180 kms bikin, 42 km running?)

有一天，兒子問爸爸：「爸爸和我ㄧ起去參加鐵人競賽，好嗎？」
鐵人競賽是最困難的比賽，必須游泳 四公里、腳踏車 180公里、跑步 42公里。


And the dad says "yes".

爸爸說好，我們去參加。

The story looks simple until you watch the following clip. Just amazing, how much can love be.... ?

以上故事看起來很簡單，請點選以下連結，觀賞影片，你將會了解愛的偉大！

我用感動的淚水向這位父親致意，也分享給大家
請用全銀幕觀看

Click here to watch the touching video clip:

YouTube - My Redeemer Lives - Team Hoyt




will be praying for you.

"People were also bringing babies to Jesus to have him touch them. When the disciples saw this, they rebuked them. [16] But Jesus called the children to him and said, "Let the little children come to me, and do not hinder them, for the kingdom of God belongs to such as these. [17] I tell you the truth, anyone who will not receive the kingdom of God like a little child will never enter it."

 

[Angelmum]

Hi Angelmum,

Thanks for sharing so frankly about your experiences as a mom with a special needs child. I think you're very strong and capable to be caring for your DD by yourself along with your son. I completely empathise about the crazy jumble of emotions that we such moms grapple with everyday, esp when we see our child struggling with his/her condition.

I realise I forgot to explain that my baby has been classified as cerebral palsy (grade 5 most severe - low functioning, high dependability), quad-spastic (all 4 limbs are affected).

:shyxxx:

Noted and had updated.
U got a tougher task

Jiayou!

 

[Angelmum]

hi mummy epicurean and angelmum.. hats off to both of u! U both are the epitome of mother's love. I just want you both to know that u two are wonderful mummies and God will surely bless u n ur family. It must be heart-wrenching to see our child in discomfort. just wanna share tis with u:

Click here to watch the touching video clip:

YouTube - My Redeemer Lives - Team Hoyt

will be praying for you.

Tks for dropping by ancing_wub:

 

[uddermummy]

angelmum and epicurean,

you two are really strong women! I salute you! Next to your difficulties, mine really look like molehills...

like you epicurean, i'm also going to go on no pay leave. At first, the leave was supposed to help me finish my masters that was interuppted when I had to deliver dd.

Now, I don't think i can complete my masters cos dd needs a lot of attention and no one else can soothe her when she fusses. Have talked to my bosses about extending my leave, but was told that i will have to reapply end of the year.

I also scared of getting a maid to help with dd cos of bad experience with confinement nanny... worried that hired help just don't have the patience nor the love to tahan my girl...

am praying for both of you, and of course myself. Here's to the great love and sacrifice of motherhood!

 

[epicurean]

Hi jojoki,

Thanks for the link to the video ... it's very inspirational and moving. Both hubby & I teared up watching it. I told bb that I'm in no shape to run marathons with him but will run metaphorical races with him

 

[epicurean]

Hi uddermummy,

It does help a lot if bosses are understanding and support your leave application without penalising your future work appraisal.

Btw, hope you managed to read the section on lifestyle changes to cope with infant GERD on that website I told you about. There are 14 tips which are very useful and workable ... made bb more comfortable and enabled him to sleep longer. Plus I think there's a list of food to be avoided if you're breastfeeding.

Yeah I understand your fear of getting help which is not patient and caring towards our babies who are more needy and 'demanding'. I also had bad experience with confinement nanny and previous maids. Current maid is our 3rd one and so far she's pretty ok. Previous maids either got scared of my bb's condition or became yaya, feeling they were indispensable coz they think they can handle him. Took us quite a while before we found current maid whose attitude and work is good.

Most important is that you need someone trusted to supervise maid/nanny ... my gut feeling is always that coz hired help is not blood kin, their patience will run out eventually esp with my bb who needs a lot of effort & attention in settling him. That's why I moved back with my parents coz MIL refused to help supervise maid. She couldn't accept his condition and wanted to outsource his care to the confinement nanny (whom she wanted to hire on a long term basis) without her having to supervise the nanny. Hubby & I refused ... so we moved back and I took extended NPL.

 

[Angelmum]

angelmum and epicurean,

you two are really strong women! I salute you! Next to your difficulties, mine really look like molehills...

am praying for both of you, and of course myself. Here's to the great love and sacrifice of motherhood!

no Monday BLUES! :001_302:

 

[epicurean]

Hi angelmum,

You mentioned that your dd is attending Rainbow Centre. Which programme is she in?

We've in the queue for EIPIC since last Sept but so far, no vacancy.

 

[Angelmum]

Hi angelmum,

You mentioned that your dd is attending Rainbow Centre. Which programme is she in?

We've in the queue for EIPIC since last Sept but so far, no vacancy.

I'm at Yishun.
If given a choice, I WON'T ask Margaret Drive (MD) to transfer us to Yishun 10::tconfused:. Teachers at MD better.

Which branch r u applying?

 

[epicurean]

We applied to Margaret Drive coz closer to where we're currently staying. Plus bb seeing physio therapist & osteopath at Biopolis so we chose to keep things within roughly same location. He also seeing occupational therapist, speech therapist, docs & dietician at NUH so looks like everything will be around west area.

 

[Angelmum]

We applied to Margaret Drive coz closer to where we're currently staying. Plus bb seeing physio therapist & osteopath at Biopolis so we chose to keep things within roughly same location. He also seeing occupational therapist, speech therapist, docs & dietician at NUH so looks like everything will be around west area.

Maybe they felt yr kid still young .... maybe they really no vacancy, suggest wait for vacancy cos MD teachers are better than Yishun. If u dont mind pte sch, there r some in the West.

fyi, attending Rainbow doesnt mean they will provide weekly therapies :embarrassed: so would advise u carry on even after u got a place. Wait till sch able to fulfil u & yr child's needs then u stop Biopolis. Otherwise, get referral to KKH/NUH via polyclinic, cheaper, about $23-33/0.5hr.

 

[epicurean]

Angelmum,
Thanks for the info. I think they really don't have vacancy coz EIPIC (early intervention programme for infants & children) is from birth to 6 years. BB's NUH doc (who saved his life in PICU) recommended us for Rainbow Centre (MD) plus she's a volunteer doc there so we'll stick to our queue instead of private school.

Appreciate your advice ... bb used to see NUH physio therapist but the therapist is so young & green, she doesn't know what to do with him at each session (tells me the same thing each time ... to roll his hips). She tried not to show how horrified she was by his MRI brain scans but it's obvious she hasn't come across other patients with that extent of brain injury (could tell she doesn't have much experience to fall back on). Kept asking me if I'm aware that bb's very likely not able to walk coz of his brain damage ... replied her matter-of-factly that yes I'm prepared for that scenario but I'm not giving up him on doing that one day.

Coz we weren't getting help from that PT, we decided to see PT in pte practice (the Biopolis one) who's a veteran specialising in special needs children. This PT has worked wonders with bb and she does more than therapy exercises with him ... she also helps to find adaptive equipment for us to use with him, helps with his feeding & sleeping by giving me feedback about his condition each time she checks him and exercises him. BB sees her weekly and even when he starts Rainbow Centre, he'll continue to see her coz he has improved so much with her (he can hold up his head now) plus she works closely with his NUH docs and OT.

I know going to Rainbow doesn't mean weekly therapy ... what's important for bb is daily therapy exercises that PT has taught us to do with him thru'out the day.

 

[uddermummy]

thanks epicurean! have actually unknowingly tried most of the suggestions given. there are good days and bad days.

i def can empathise with the mil part. my mil seems to think that anything and everything wrong with bb is because i'm bfing her, and my bm is not enough. When she knew bb had reflux, i was so worried that she would ask me to stop bfing.

am taking leave to look after bb till end of year, but don't know if my extension till next year will be approved. If not approved, will have a major headache cos i'm about the only one with the patience to soothe bb and not stuff her with milk everytime she fusses. Even husband can't tahan her.

 

[epicurean]

Hi uddermummy,

Yeah, there're indeed good days and bad days ... I define them by the amount of vom that bb ejects and how fussy/unsettled he is.

Our PT helps us put things in perspective ... she intro'd us to another patient of hers ... this 6-year-old boy with even more worse GERD who's also severe CP like my bb. But this boy does projectile vomitting, sometimes even on an empty stomach ... he's also breathes with help of ventilator and tracheotomy (breathes thru' tube inserted into his throat). His mummy is very strong and positive ... i'm humbled by her generosity in sharing and helping.

I salute you, bf mummy! It ain't easy ... from what I've read about GERD, breastmilk has natural antacid that's good for babies with reflux. So don't your mil get to you, ok? I couldn't bf my bb coz of misinformation and misguided decisions during the 1st 72 hours of his life when he was in life-threatening danger in PICU. That is always something I wish I could have done for him.

Yeah, it takes lots lots of patience to calm & settle a refluxy baby coz the problem doesn't seem obvious like a dirty diaper. I think your hubby will come to understand as he knows more & more about GERD.

 

[Angelmum]

I know going to Rainbow doesn't mean weekly therapy ... what's important for bb is daily therapy exercises that PT has taught us to do with him thru'out the day.

came across a number of parents who attended EPIC, paid $120-200/mth but didnt get any therapy:tkaboom:so they were quite disappointed.

 

[uddermummy]

epicurean, is your avatar picof ur boy? he's lovely!

 

[epicurean]

Angelmum, thanks for info ... I'll have to moderate my expectations about Rainbow Centre then. You're the 2nd person to forewarn me about putting too much hope on rainbow and what they can do for bb. Will wait for vacancy to open up and see what they can do for him.

 

[epicurean]

Hi uddermummy,

Yeah, that's my boy!

Thanks ... I think he's beautiful but of coz I'm a tad biased hahah. Do you have a pic of your dd? I'm sure she's adorable,

 

[uddermummy]

having v bad flu. will try to upload her pic.

 

[Yukee]

Hi Epicurean...after reading abt your boy and Angelmum DD conditions (jus like Uddermummy said) mine are like molehill...but don't give up...we prepare for the worst but look at the bright side and do our best...

Hi Angelmum, think the fee for RC is likely to increase in Sept or nx Jan...dono abt YPS...we jus fill in the Mean Testing form few weeks ago...tell you a incident which make me so upset abt one of the social worker in MD...due to the increase of sch fee in Jan09...actually we jus pay the fee without any complaint...until recently i realised that since we fill in the registration form for my gal when she entered RC in 2005/2006 (i can't remember), we didn't fill in anymore form that declare my HB's salary...so how come they jus increase our fee without informing us or letting us fill in anything, so i approached the social worker...i asked her how she derived to the amount that we need to pay...she took out her calculator and press and press and said 'ur gal attending twice a week right?...so 1 mth 8 lessons right?...u are paying $200 right?...so each lesson is $25, plus all the therapies, don't u think is worth already?'...i was so shock to hear the answer and dono wat to say...my hb was so angry he told her off...he said 'we are asking you how u derived to the amount we need to pay for my gal's fee not asking u worth or not worth!!'...throughout the whole session she is so rude...i mean social worker suppose to be passionate, helping those who need help not jus brush us off with those answer...if really talk abt worth or not worth...my gal did not get any therapies until this year then she got her SLT...shd hv told her off also...really disappointed...

BTW Epicurean hope won't frighten u off...overall most of the teachers at MD are good...if u are lucky ur boy will meet a very good one...jus like my gal in last half of 2007, she met a very good teacher...that half year she improve alot...thanks to that teacher, but she quit...

Saw the video clip that Jojoki posted...was tearing when watching it...watch the below clip...is a funny one to cheer everyone up...delicate to all mummy...whether with normal or special children...Happy Belated Mother's Day...

YouTube - Funny mum song-with lyrics